Loneliness of Living with Disabling Chronic Migraine

Every single day it’s me at home alone with Felix and Maisy, but then I get to spend my evenings with my husband. Those few evening hours aren’t enough, and the pets aren’t great conversationalists. It’s lonely. And the loneliness has made me so desperate for human contact I’ll put up with things that bring me down and make me unhappy because it seems better than having no human contact at all.

My therapist keeps saying it is only natural that someone in my situation would make that choice even when it seems so obviously counterproductive. I know in my head she’s right. But I still feel pathetic for being so desperate I’d allow a friendship to be entirely on someone else’s terms, all the while frequently feeling uncomfortable as can be because I wasn’t setting limits.

Every challenge in our lives is an opportunity for growth, including the profound loneliness I and so many of you reading this live with. For me it’s an opportunity to strengthen relationships with people I love, but haven’t made a priority, such as my brother. It’s also an opportunity to practice gratitude. I have an amazing husband and a wonderful marriage. Somehow despite the extreme challenges for both of us associated with my health issues, we are happier and more satisfied and fulfilled than ever. I can’t take that for granted. I have an amazing, supportive and understanding family. I can’t take that for granted, either.

Human contact is super important, but there’s a lot to be said about the simplicity of our relationships with our pets. Those little cuddle monsters ask for so little, but give me so much in return. It’s an easy exchange. We cuddle each other and everyone is happy. Well, everyone except my husband, who gets tired of all the pet hair that collects on his side of the bed each day. It’s a good thing he loves me enough to overlook it.

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Comments

I also am so grateful for my dogs. They’re here through thick and thin, always loving unconditionally. I’m home alone so much, and even though my husband has been so supportive and empathetic, there are times he’s not feeling well himself with the crippling arthritis he suffers with, and yet he works like a crazy man. But our dogs are like our children. If anything happened to them, we would be a mess.

what we need and get from our furbabies is the unconditional love and non-judgment that we so desperately want and desire that lack in our human lives-where we are judged and love is withheld because we are deemed “lacking” and “unworthy” because we are “broken” and don’t “stand up to par” with THEIR standards. We cannot help it we are sick. No one would ever wish for this sickness. NEVER. And even though they see us try over and over and go to countless doctors and try countless meds and alternative therapies and holistic remedies, they always want INSTANT and they expect a PERMANET solution, to which there is none. We have wished for years for ourselves there was a cure and a fix but that’s like wishing for world peace and a cure for cancer. Sometimes the isolation is a balm, the silence is welcome, to separate us from the chaotic noise and smells and sounds that set us off. But also to shield us from the constant judgment, criticism, non-helpful medical advice by non-medical laymen, and disappointing people by cancelling last minute by yet another migraine attack, or another chronic illness as I have multiple. With your furbaby you don’t get any of that BS. And when your at your sickest and lowest they snuggle up to you closer and give you more loving kisses trying to make you feel better. Humans by nature are flawed. They only want to understand what they want to and block out what they don’t. They deliberately put up walls to block you out if your flawed and they don’t have time for illness and don’t want to deal with it. They treat you like a modern day leper. You are an inconvenience to them. For some the vow “for better or for worse, in sickness and in health, till death do you part” does not mean anything anymore. They don’t take their vows seriously. And when you try to be empathetic to their woes for years that are not as painful and as complex as yours, and to get smacked in the face so to speak in return, well that just smarts. But to try to keep dignity intact and not turn in into a free for all. In the end each will be judged according to how they treated others along the way and I don’t want to be condemned for that. So I crawl along and do what I can when I can and if I’m bed bound then I am. What am I to do?? I snuggle with the only one who seems to really care and that brings me comfort. I don’t know what I’d do without my little furbaby. He is a 14# Deer Chihuahua. He’s my handsome little 3 yr old boy 🙂

Thank your for this most important conversation about the loneliness of chronic migraine. Dogs have saved my emotional life over the years of my decades long adaptation to chronic migraine. Right now, my 7 lb Japanese Chin dog has learned to signal when I am about to “go down” or go to sleep under the influence of cortical spreading depression. It’s a unique bark that lets my partner know. Sometimes, her signal helps me waken enough to get to a bed for my own safety or to get fluids if I have overlooked hydration. Mostly, she helps me know that I am “not making it up”, that I am cared about in the moment I am withdrawing deeply. The comfort of animals for people in pain is becoming more and more clear. And to anyone who has benefitted there is no doubt.

Human relationships are another matter. So often friends and family want people with illness to show strength and resilience. Bravery and good cheer in the face of of desperate conditions. The stories are so uplifting in my community… about those people who don’t complain and who manage to act as if they are well when in fact they are not. This community pressure makes it easier for others but leaves little opportunity to be emotionally honest in relationships. This cheats everyone from an exchange of emotional vitality. Polite hints and winks of well wishes and the scent of “oh please, my own suffering is too much…don’t go there” surround the exchange, leaving longing for true contact in the wake.
I know we are all doing the best we can but it can feel lonely.

It is ever so difficult and scary to stand up for one’s self inside relationships
where you feel dependent. Your therapist’s advise is wise. Maybe another post about how challenging it is to sustain relationships with 2 leggeds?
We seem to be fine with the 4 leggeds! Sweet ones.

I just lost my husband to chronic migraine. We’d been together 3 years, married for 1 1/2. He has a 12 year old son and I have a 15 year old daughter. We had a family. My migraines became chronic a little over a year ago and I had to quit my job teaching. My husband was my support system. My family all lives out of town. He never complained one time about taking care of me. Meanwhile, I was doing everything I could to get better. Then on January 4, I woke up and he told me he was leaving me, he wasn’t happy anymore. He packed up all of his and his son’s things and left that night, and from that moment it was really over for him because migraines aren’t fun and they weren’t part of the bargain. Thankfully, I have friends and family who have stepped up to help. But lonely? I’ve never felt so lonely. Migraines cost me the love of my life. Sure one can debate what kind of an asshole leaves his wife like that, but it’s done and I’m the one crying myself to sleep every night.

I really appreciate someone pointing this out. What a relief. I always tell my one very close friend how living like this is painful (living with chronic migraine) but it also hurts that “No one” can understand it. I can’t make definate plans to go here or there because I don’t know how much pain I’ll be in. People/friends/family, have started to think that I’m angry at them or avoiding them. And of course, I get everyone’s two cents on what I should do. It would be one thing if I wasn’t doing anything at all but I do everything I’m told. At this point I’ve accepted that I’ll have to live with this. I’m just trying to somehow, manage the serverity of the pain. I recently ended up in the hospital because I got what I call, “Slammed.” It was to the point that I couldn’t take the pain, puking and dehydration. We all know that the ER just gives us a “quick fix” and sends us home with instructions to follow-up. Well, the ER doctor actual took interest in what I was going through and asked me how long I’d been living with this, what I was taking and what I’ve tried. Once I told him I had botox done last February and had to live with those side effects until it wore off, which was late last June, he stopped me. He asked if I could demonstrate the procedure. I have to admit, I was somewhat irritated because what they had given me didn’t work and I just wanted to go home. But, I did what he asked. He was very concerned after that. My 21 year old son was with me when I had Botox done and was there at the ER too and gave his statement of what happened. Turns out the ER doctor thinks I have nerve damage. I had to follow up immediately with my PCP, not my current neurologist. My PCP is sending me to what will be my “THIRD” neurologist. So, on top of “everything” it seems I have somethinge else to ADD to what I live with everyday. I can only imaging having to explain this to my family. As it is, they don’t get it. I know I’ve gone off topic for a bit but my point is, this is probably the loneliest I’ve “EVER” been. My dogs, two pits, are such a comfort. They “know” when I’m not feeling well. They lay and sit with me wherever I am (bed/couch/FLOOR). And it’s very sad that they seem to understand whereas the people who are supposed to love and care about you, don’t. Anyway, I’m not sure what’s next but I know I always have my dogs to help make me feel comfort without being judged. I apologize if I didn’t make much sense, meds.

When I read your post here, I can’t help but wonder – is there a reason you’re not seeing a board certified Migraine specialist? When I hear stories like yours, this is usually the first thing I ask, as most patients don’t even know specialists in Migraine exist, yet they are often life-changing to patients.

I have been thinking about this a lot lately – I’m currently going through a particularly bad spell (I’ve had chronic migraine for 10 years), getting depressed, missing lots of work, ER visits, days in bed, etc. And I’m realizing I have no one to talk to about how overwhelmed I am by it all…I’m trying to be strong. For my job, for the few friends I have left, for my boyfriend. I had a husband once, and can’t help but think part of the reason that relationship didn’t last was because of this 3rd party. The Migraine. I don’t want to do that again. I already spend half of my weekends in bed, I’m 37 and I’m falling apart. It’s the loneliest feeling in the world and I’m paralyzed by it.

I am going through major prescription changes so am stuck at home, in pain, a lot of the time. I relate to the loneliness and the feelings of letting myself down. My husband works long hours and sleeps most evenings and weekends away. I pray every day for pain management so I can function more fully. I push myself to get up and get out of the house as often as I can and that helps. I talk to anyone and everyone at the grocery store so I have human contact. But there are still many hours in bed, not functioning.

my dogs bring me comfort. People & family……not so much. I’m either judged, feel like I’m walking on egg shells, being asked everyday “are u taking ur meds correctly?” etc…etc..!
I’ve been living with people ALL OF MY LIFE who seem to think they have power over me (since they help $$ support me). 1st, my step-father throwing me out of the house on my 18th B-day, then having to live with my girlfriends parents, then getting married 5 months before I turned 19…then being controlled by my narcissistic husband for 28 yrs (only to be shunned by him & him wanting to commit me when my migraines became Chronic (2011)….now to living with my sister & niece since 7/2012…..and having her boss me and putting me down. I pray everyday to God, any God, All Gods…..to take away the pain so I can be independent or I pray to win my Disability Case, so I can then live freely (on a very strict budget of course). If I get lonely, I’d like to just be able to visit my adult children or talk to them on the phone (when my ears can handle it). Sorry for any typo’s..migraine fog. Thank you for your posts Diana. I always enjoy reading them.